We are committed to continuing our support of organizations that are making a positive difference in the lives of those affected by Duchenne muscular dystrophy and have opened the application process for this year. Detailed information about the submission process as well as an application cover sheet is available here. Applications for the STRIVE Awards for the DMD community will be accepted from March 1, 2017 to May 31, 2017. Recipients will be announced in September 2017.
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The 2016 STRIVE for DMD awards recipients are four exceptional organizations committed to supporting people affected by DMD. In recognition of their novel and innovative solutions to the unmet needs of the DMD community, the groups were awarded grants to enable them to deliver projects to benefit those affected by DMD. The details for each of the four organizations and their projects are listed below. Please join us in congratulating them and their tireless contributions.
“We are delighted to present our STRIVE Awards to these organizations, who play an incredibly important role in supporting and improving the lives of boys and young men with Duchenne muscular dystrophy, We are pleased that our support through STRIVE can help patient groups bring to life ideas with tremendous potential to benefit the Duchenne community.”
Stuart W. Peltz, Ph.D.
Chief Executive Officer, PTC Therapeutics, Inc.
CureDuchenne | United States (US)
As boys with Duchenne muscular dystrophy (DMD) start to lose ambulation and muscle strength, mobility equipment plays an important role in keeping them active and supporting day-to-day living. Parents and caregivers want to ensure their children have the most appropriate equipment for their needs, but travelling to and getting around a large conference center to view the wide range of options available can be a huge challenge, particularly if the patient has already started to lose ambulation.
In 2017, CureDuchenne will bring the mobility equipment exhibition experience in to the living rooms of families affected by DMD in the United States (US). Their STRIVE Award-winning idea, Virtual Durable Medical Equipment Expo, is an innovative, interactive education and networking website for caregivers and family members, which will enable them to access information anytime, and from any location.
The new website will host up-to-date, unbiased and extensive information on a wide range of durable medical equipment, including mobility devices like wheelchairs and scooters, orthotics, transfer systems such as stair lifts and hospital beds, and respiratory aids. To help them make the right choice, users will be able to read first-hand equipment reviews from families of other boys with DMD, and can ask the wider Duchenne community questions via online discussion forums.
Through the website, CureDuchenne aims to empower and provide hope for the 20,000 Duchenne families living in the US by helping them navigate the many challenges and questions that surface with a DMD diagnosis. Over time, the website may also help facilitate the exchange of second-hand equipment and include additional content relevant to the care and support of boys with DMD.
CureDuchenne’s mission is its name: to cure DMD. The organization’s goals are to find a cure for DMD and to keep patients healthy and mobile for as long as possible while treatments are in development. Through their CareDuchenne Cares program, they travel the country, providing hundreds of families affected by DMD with valuable information on how to keep their loved ones ambulatory and healthy for longer.
Dystrophy Annihilation Research Trust (DART) | India
Duchenne muscular dystrophy (DMD) is the most common muscular dystrophy in India. However, as a rare disease, DMD is not currently a Government priority and diagnostic, management and rehabilitation facilities do not meet patient needs. Moreover, a lot of DMD sufferers live in geographically isolated communities and cannot easily travel to city centers for counselling, physiotherapy and medical attention. As such, many boys with this debilitating condition receive no professional treatment or support.
Through their winning program, India’s Dystrophy Annihilation Research Trust (DART) intends to change the current situation and bring hope to people affected by DMD. In 2017, the DART Mobile will be ready to RACE (Reaching out with Awareness, Counseling and Epidemiology)! The mobile unit will take to the road across the state of Karnataka, India, to raise awareness about DMD among the general public, provide counseling to people affected by the disease and offer free medical check-ups.
An on-board physician and physiotherapist will guide families affected by DMD – many of whom have received no previous support – with techniques and tips to help them care for their loved one, and will reach out to local healthcare professionals with accurate, up-to-date information on DMD. In cases where further specialist medical attention is required, the DART Mobile will enable ‘virtual’ teleconference consultations with experts in the field. In emergencies, the customised vehicle can even serve as an ambulance.
With public awareness of DMD currently low, DART expects to identify children with previously undiagnosed DMD and, as part of the project, will conduct the first clear study on prevalence and epidemiology of the disease in India. The organization hopes the results of this research will inspire researchers, healthcare professionals and government officials to introduce new policies and initiatives that raise standards of care and public support for children with DMD.
DART is committed to supporting children with MD and their families. Working towards the ultimate goal of helping to find a cure for MD, the organization facilitates important research in state-of-the-art facilities, while raising awareness about the condition and providing families with advice on treatment and management.
Foreningen for Muskelsyke | Norway
A healthy diet is important for giving boys with Duchenne muscular dystrophy (DMD) the energy and nutrients they need to stay fit and healthy for longer. However, with eating and drinking comes the need to use the toilet, and the progressive muscle-weakening caused by DMD can make needing the toilet when outside the home a cause of social embarrassment for boys with this condition. Some boys dare not visit their friends, go to football matches or socialize in case they have an accident, leading them to become increasingly isolated.
Through the STRIVE Awards program, PTC will support Foreningen for Muskelsyke (FFM), Norway to run a residential weekend course designed to educate boys about the benefits of healthy eating, increase their self-esteem and provide practical advice around needing the toilet when out and about. Ten teenage boys and their carers will be invited to participate.
In a relaxed atmosphere, the course will tackle the topic of toilet troubles and discuss different solutions and medical aids that can be used to assist them in various situations. To encourage healthy eating, participants will learn about the benefits of good nutrition and will prepare and sample food on-site. The course will also provide boys with an opportunity to make friends, open up to each other about the challenges they face with their condition and receive advice from healthcare professionals.
In Norway, an estimated 5,000 people suffer from a neuromuscular disorder. FFM is the only organization in Norway for people with these conditions. With 1,500 members, FFM provides information and support to people living with neuromuscular disorders, their families and the Norwegian healthcare system.
Muscular Dystrophy Queensland | Australia
In Australia, funding for programs to support adults with DMD lags behind that for programs focused on children. Without the information and support they need for a smooth transition in to adulthood, DMD patients can feel ‘abandoned’ and remain dependent on parents and carers as adults. However, Muscular Dystrophy (MD) Queensland believes that many adults with DMD can live well independently if they are provided with the right information and positive influences early on.
With its innovative STRIVE Award initiative, MD Queensland wants to empower young people with the confidence and knowledge that they need to take charge of their health and wellbeing, live independently and pursue fulfilled lives as adults. Through ‘You’re the Voice’, the organization will enable adult role models to share information, advice and experiences first-hand with young DMD patients transitioning from adolescence to adulthood.
The project aims to capture the voices of at least 50 inspiring individuals with DMD from Australia and beyond. Recorded content – including personal stories, expert interviews, discussion of treatment guidelines and medical papers, and general advice on how to ‘live well’ with DMD as an adult – will be available online through radio programs, podcasts and short soundbites. By educating teenage boys with DMD and inspiring confidence, it is hoped the project will inspire a new generation of adult patients who advocate for optimal care of themselves and others.
To extend the reach of the program to the global Duchenne community, the audio content will be shared with other patient groups around the world. Attractive infographics, which can be printed out to remind users of the key ‘take-home’ messages, will complement the audio materials.
MD Queensland works alongside people living with muscular dystrophy and other inherited neuromuscular conditions in Queensland, Australia. The organization supports research in to the causes, treatment and management of muscular dystrophy and provides patients and their families with support services and equipment to enhance their quality of life.